Wife of a Diabetic

Another year gone!

noreply@blogger.com (Unknown) — Tue, 04 Nov 2025 21:59:00 +0000

Update of diabetes wife. It's now been over 7 years since the hubs died. I remember him saying to me, "when I'm gone, you will forget all about me!" Wish I could say to him, "LIAR!!!" LOL!!! No, I think I think of him more often than not, still trying desperately hard to learn from my time as the wife of a diabetic. Now....I'm the widow of a diabetic. Grief never ends. It just becomes a part of your past, of what makes us who we are today. It makes us stronger. It makes us even more capable of enduring whatever the future tosses our way!

Living in a retirement community I continue to see people come and go. I meet people who are pre-diabetic and immediately want to "teach" them and tell them what to do and what not to do. Most days I keep my mouth shut because I realize they just don't want to learn, want to hear, want to know! Absolutely no one wants to know that diabetes "killed" my husband! It was a heart attack! And when I ask how his heart got so bad....it was his age. There is an excuse for everything but never an admission that being pre-diabetic or diabetic could be the beginning of the end.

I've managed to get the weight off that I put on during covid. At age 74, I'm not on any medications, drugs or supplements. I'm trying hard to maintain a consistent caloric input around 1200 calories per day and to get in between 7500 and 10,000 steps. I have a set of yoga/exercise/movements that I do to strengthen my back and muscles around my spine. All of my labs are good! I will confess it has NOT been easy. So I understand how someone with diabetes can give up! It really would be easier to just sit in front of the TV in my recliner and eat whatever I wanted. I tell myself I'm happier this way. The question is....is it the truth? Can I convince myself of that? A battle I face every day! I keep telling myself that nothing tastes as good as thin feels!!! I have 15 more pounds to go to get to my goal

To those of you living with a diabetic spouse, keep the faith. Take one moment at a time. Breathe. Live. Pray. I still say that prayer is what got me through and what keeps me going.

How time flies!

noreply@blogger.com (Unknown) — Tue, 21 Jun 2022 02:48:00 +0000

It's been a couple years since I last posted. Much has happened! My hubby has been gone almost 4 years now. The pandemic is "over". I did manage to get the delta variety and survived, but I was pretty sick. I dosed myself with ivermectin and a z-pack that I had obtained from Mexico. 10 days sick. 2 months later my hair fell out. Well - that was special! It's growing back nicely. No other side effects.

Bought a little r-pod travel trailer and have spent the past 2 winters in Yuma next to my sis and her hubby. Been quite the adventure. Went out camping with 4 other women last week and 1 of the gals managed to roll her vintage trailer. It was totaled. She walked away. She drove to the campground and spent the night with me in my pod.

About 11 pm, I woke up to this very faint beeping. 4 beeps and then a pause, 4 beeps, a pause and it would repeat several times then quit. I didn't want to wake her up, but I finally had to turn the lights on as I thought it could have been one of the sensors for gas or carbon, etc. Nothing was flashing. I told her what it sounded like and she pulled her glucose monitor out of her bag. Sure enough, that was it and she was LOW and had not heard it.

I got her something to eat. I guess I will stock some glucose tabs! I told her it was God's plan that she spent the night with me and I could hear it and wake her up! She had never told me that she was diabetic and that was the last thing I was thinking about.

But it hit me.....it just doesn't matter where I go or what I do, I have decided diabetes will follow me forever! And I think enough time has passed that I can start to handle it a little better. So I have come back to this blog to look at comments. There were more than I anticipated. This one I will share:

Thank you for this forum. My husband of 45 years was diagnosed with Type2 diabetes about 3 years ago. He took it seriously at first, and it was a real joint effort. In fact he did so well that 3 months later the doctor took him off insulin. At the time, my older daughter said she wished it had'nt been so easy..it would be too easy for him to think he could beat it whenever he wanted. Fast forward 3 years..she was 100% right.When he started becoming really disoriented, barely able to walk, I kept begging him to check his blood sugar, and he kept refusing.We went to the doctor on Monday and his A1C was 12.1,blood sugar 550+ I heard him tell his brother he was just "going to take it easy and let me take care of him" I cant tell you how furious that made me. He refused to test even after I begged him, and now I'm supposed to pick up all the pieces and give him all this the support and understanding.I can't put all this worry, anger, frustration, and resentment on my daughters..it"s not their burden. Thank you all for sharing your stories and allowing me to vent. I figured I wasn't the only one out there..the lying to the doctors,(and everyone else) the irritability,the defensiveness..I'm so sick of it.

I get it! Obviously I've been through it. He did not get to 12.1 overnight, in a week, even in a month. It probably started 3 years ago when he went off insulin. But I have to ask....did his doctor check his insulin? I remember that my hubby's kidney function was at 50% the first time it was tested and I wondered how that could be possible? Why had no doctor ever checked it when he had been a diabetic since his 30s? I get your anger. I still have moments of sheer anger over what my hubby put me through. But we all have to remember that this is NOT our disease. And we cannot fix it, control it, stop it, or help it. It's up to that person who has it to do the right thing, to take care of their body, to follow their doctor's orders. That being said, it still pisses me off!

You would think that the friend who camped out with me would have told me that she is a diabetic. I can't fathom spending the night with someone and not notifying them that there was a possibility that I could go low. To me, that seems unreasonable! But then I think back and I can remember numerous times when hubby was unreasonable!!!

I will try to check in a little more often. But in all honestly, diabetes is no longer at the top of my thought list. I seriously miss him, but I do not dwell on his death or my loss. I try hard to focus on the good memories, the happy times, the fun we did have.

What I have learned living in the retirement apartment complex and living through covid is that there is a lot of loss. I lost 12 friends in 3 months last fall. Half from Covid, half from other reasons. More loss than I ever anticipated living through. But in retrospect, if you recall, my 33 year old on died 7 months before my hubby died. That was the biggest loss I have endured. It doesn't get easier or better....you just adapt your life and keep doing your best. The loss of all those friends was so hard. That definitely changed my life again. Surviving covid changed ME. I have become more determined to continue to take care of me, do the things I love, be my best self every single day. I'm 70 years old now and most days I can out-do any 50 year old so I'm pretty happy with that!

And have I mentioned karaoke? A friend here got me started back singing and I just love it! I've bought my own equipment and can set up and sing whenever I want. What a glorious way to recover from grief! It's turned out to be a great lung exercise and stretches my brain cells having to memorize music and words. I run the computer so I had to learn the software. It's been a great journey of recovery!

My prayer for those who find this blog is that you will come to realize how important you are. Love yourself. Treat yourself well. That will give you the strength to be the caregiver you need to be. But that's it - you are a caregiver, a spouse, a companion....but you are not the diabetic!

I converted a pantry in my apartment to a "garage" - a place to store all my tools and cleaning stuff. I put a sign on the door that says "My garage - I can fix most things except stupid!!!" Need I say more? LOL!

Diabetes and the virus

noreply@blogger.com (Unknown) — Sun, 31 May 2020 20:52:00 +0000

I am so, so, so grateful that he is no longer alive and that he did not have to go through this pandemic with diabetes. I cannot fathom what it would be like.

However, the virus has brought back many memories about his diabetes. I am now 68 years old. So I have been labeled as "vulnerable". WOW! Forced to be quarantined way longer than others and I fully expect our governor (Colorado) to add another month tomorrow.

The injustice that I feel is unreal. I am not VULNERABLE!!! I am healthy, active, in love with life and now I cannot visit my friends. Line dancing, karaoke, everything has come to a complete standstill for more than 90 days here. I live in a building filled with senior apartments. Our manager decided that we are "congregate care" and imposed needless restrictions on everyone. I wrote a letter to the president of the board explaining that we are congregate living, not congregate care. They took the signs down. But they didn't change our restrictions.

I've probably come closer to breaking all the rules than anyone I know. We have 2 people sick out of 47,000 in this county that consumes over 1500 square miles! It is ludicrous that every county is treated the same regardless of the impact on them. Small business here are not going to open back up. They didn't make it through this.

I sat here in this building looking out the window on Mother's Day. Some families lined up and waved. But my heart ached for the women here who weren't allowed to visit or hug their children or grandchildren. I think down the road, we will find that this quarantine of the vulnerable was a huge mistake.

And then I think of my husband. It's almost 2 years since diabetes took his life. He would never have made it. He would have been so angry and that would have just kept his glucose levels sky high. He would probably be in jail. LOL! And then I think about the medical aspect of diabetes throughout this pandemic. Would he have gone to see his doctor? No. Would he have gone to the hospital if there was an emergency? No. He loved to dine out and this would have been his greatest heart break - not being able to dine out. Would he have survived this? I'm glad he didn't have to go through it and I don't have to know the answer to that.

Will I survive it? Of course! I'm looking for non-congregate living. I'm looking to buy a tiny house, or a small place.....somewhere where I am totally independent. Don't get me wrong, I love my apartment complex. I have a blast here. But because they have made separate rules where groups of seniors live.....I need someplace else. Perhaps in addition to this place. Somewhere i can go if they lock us down again.

My heart truly goes out to the spouses who are dealing with diabetes during this pandemic. I just can't fathom. As difficult as it is to be a spouse during normal times, this has to have been the worst experience ever! My prayers are with each one of you. May God bless you richly!

Diabetic spouse residual trauma

noreply@blogger.com (Unknown) — Sat, 31 Aug 2019 22:43:00 +0000

I was coming out of a friends apartment the other day and the gal across the hall happens to be one of my best friends. I'll call her Jane. Tilde, another gal, was visiting her and Jane was rushing out of her place to run up the stairs to Tilde's place to grab her insulin tester. Jane yelled at me, "can you watch her til I get back?"

Let me back up a moment. Jane's husband died of diabetic complications 2 years before mine did. We are probably the 2 most knowledgeable gals in the building when it comes to dealing with a diabetic.

Of course I went in to her apartment and started talking softly to Tilde. She was having sweats, felt like vomiting, had her head between her legs and a wet cloth around her neck. She had eaten peanut butter, drank orange juice and wasn't making any progress. I was trying hard to determine if she was low or high......having no prior knowledge that she was diabetic.....and non-compliant at that.

Jane returned with the testing kit and she didn't know how to use it. (her hubby had been on a pump for years). The test strips were dated 2000!!! It didn't take me 2 minutes to figure it out and we tested her. 298. Was she coming down or going up? Knowing what she had just had to eat, I made the call that she was low, going up and would probably be ok for now. But I urged her to call her doc first thing the next day.

When I left to go back to my apt, I couldn't help getting pissed off. I have come to love both of these gals.....but I am certainly not ready to take on diabetes again!!! Tilde certainly needs to get her diabetes under control. I have eaten enough meals with her (not knowing that she was a diabetic) to realize that she merely eats everything and anything she wants to eat and is severely overweight. Why am I surprised to find out that she's diabetic? I don't know! I think life just continues to surprise the crap out of me on a daily basis! LOL!

Perhaps my vast knowledge and experience with the disease will be of assistance down the line. Everyone in this complex is over 62. Many in their 80s and 90s. I will help when needed. I will always help. It's just what we do. On the other hand....it hasn't been long enough and it brings back so many fresh memories and I just don't want to replay that record. I knew that would happen. I knew that the moment hubby died, I would run as far away as I could from anything diabetes related. But you can't get away from it in this world. And you need to use your knowledge to help others.

The second interesting thing I'm learning......death. If you recall my 33 year old son died 10 months before my hubby did. In the past week, 3 people that I know have died. 2 locals. I thought that I would attend their funerals....but have decided that I can't. I'm just not ready to be around another person's grief. I feel bad that I'm not going, but I hope they will understand. I sent sympathy cards. I have no idea if/when I will be ready to attend a funeral....but it is just too soon for me.

I guess I like that aspect of my current phase of life. I am starting to listen to my gut and do what is best for me, not what my head says that I should be doing. I've been traveling the past month and went off my diet. My stomach is totally out of whack so yesterday was my day to get back on track. Listen to my gut!

Is this all residual trauma from having been married to a diabetic? having gone through the loss of him and my son? There are just things that my gut says, "don't deal with that" and I walk away. Will I regret it down the line? Perhaps! Will it help me heal? I have no idea! And what other residual issues will I face in the months to come? Am I staying as active as I am in order to avoid dealing with grief? Or is it healthy to move on and live the best life you can while you still can? I'd like to think the later is the truth, but perhaps the truth is that we will never know.

What I am learning is that each and every one of us has a story to tell. We've had ups and downs in life. We deal with grief differently. We deal with disease and health issues differently. But in that process, we are there for our friends - whether we want to be or not. We can support them, lift them up, hug them and mostly, just listen to them.

When Tilde was having her sugar crash....all I did was ask her a series of questions. But it took the focus off how she was feeling and made her think and that got her out of her crash. I was persistent, reasking each question to make sure she was listening and in the moment with me. The first few were like dragging her out of a bog, but it got easier and we got her back to the present and she responded with great accuracy to most of my questions. This is what you do with friends. It's what I did with hubby. Stick with it to the very end......and then deal with how you feel about what just happened after it's over.

So yeah, I still get pissed over diabetes. I haven't forgotten about it at all. I will always remember every moment of hubby's life and now I will add to that the stories of my friends who are non-compliant. You can always lead that horse to water, but you can't make it drink. Residual trauma. With us for life. But my life is so, so, so much better now that I'm not a diabetic spouse. Yet at the same time, I will support, help, assist, love and cherish my friends - even the non-compliant ones.

Hope you are having a calm period with your non-compliant spouse/friends.

DW

How time flies!

noreply@blogger.com (Unknown) — Thu, 23 May 2019 04:21:00 +0000

Has it really been 3 1/2 months since I last posted? Amazing! I am meeting goals and doing well! Here are my updates:

Down 30 pounds, 10 more to go!

Have been taking private dance lessons as well as group lessons. Learned enough line dances that I am now teaching them 4 hours a week. Dancing 6-7 hours a week. It feels great to move!

Moved into a studio apartment in a 12 story senior complex and absolutely love it! My sister is moving in 2 doors down from me in a week. We are on vacation in San Diego this week. 2 other close pals have moved into this complex as well.

Am learning how to run a professional karaoke system and have started singing again!

Sold my house. 36 hours on the market and had a full price offer.

Gave my car to my son and traded the truck in on a 2019 Subaru Forester. Love it!

One step at a time. Things are getting done. As I said, it’s good to have goals!

I have fallen in love with life...which has opened my heart to all kinds of emotions and feelings.

Including love. I never thought I would love again. I didn’t think it was possible. I wasn’t looking for it. But I am learning that life is full of surprises. And while I know that I am fighting it, I wonder if I just let go and let my emotions run with it....what might happen?

At the same time, I realize that I still have a hundred million issues to work through, so I am taking this one step at a time.

But it sure feels good!

Just an update to say that life is good. Perhaps I’ll post again once this amazing vacations n with my sister is over!

So glad we are done with January!

noreply@blogger.com (Unknown) — Tue, 05 Feb 2019 13:32:00 +0000

It was harder than I thought. The first was our anniversary. UGH! The 16th was the six-month anniversary of his passing. The 19th was his 65th birthday. And if he were still here, he would have done it big! For his 50th, he took us on a 15 day cruise through the Panama Canal. I can't help wonder what he would have done for his 65th? He was always chatting about taking a world cruise.

So I cried a bit. Then I decided to go buy a case of our favorite wine. It's made locally. I'm not a drinker - the last case we bought, I gave every bottle away as a gift. But that night, the 19th, I came home and opened a bottle and had a glass.

As I sat here in tears, I decided to FaceTime my sister who winters in Yuma AZ. She said, "come on down" so I packed my car and left the next morning! Was I "running away"? I think perhaps I was. I spent 2 weeks in Yuma, and did a 2 day drive over to San Diego to visit the ocean for the second time in 2 months! I soaked up the sun. Decided to start on a low carb diet. Had numerous "awakening" moments. And about 10 days into the trip, our youngest sister called and said she wanted to join us so she flew down and spent 5 days then drove home with me.

Some of my ah-ha moments:

1) I have too much black in my wardrobe. That's been going on for the last few years. I need to brighten it up. So I went shopping in Yuma and San Diego. Not real successful at the color change, but I did add something gray and something green! LOL!

2) I need to start taking better care of me. So I got a manicure/pedicure. I do not know when the last time was that I wore nail polish! They look nice and I plan to maintain them with regular mani/pedis.

3) About 13 years ago, I had a theft and most of my jewelry was stolen. What was left, I was afraid to wear. I had gotten lazy. I didn't even put earrings in. That is changing. I bought new earrings on this trip and I have worn earrings every day for the last 3 weeks. I am cleaning my jewelry and getting ready to wear it more often. Going to dress better. Going to start looking as though I feel good whether I do or not! Hubby had given me a gorgeous diamond tennis bracelet that I kept locked in a safe. It's now on my wrist. I love it!

4) I have lost 11 pounds. What a difference that makes! My 50 year class reunion is this July and I am motivated. 25 more pounds to go at a minimum. But already, I'm in a size smaller jeans and it feels great! My left foot that I broke 6 months ago is all healed. I've started walking again. Might even get back to the gym.

I'm doing low carb. Trying to keep it under 20 carbs a day. Wow! That is a tough one! Lots of meat, cheese and eggs. Interestingly my appetite is way down and I read that can happen on low carb diets - so I'm happy with that. Lots of omelettes. I am hoping I can stick with this. Perhaps one of the easier diets to be on when traveling. I can almost always find shrimp cocktail!

5) I started drinking coffee. I have never ever liked the taste of it, but I tried some Cinnabon in Arizona and decided I could handle it with a ton of creamer in it! LOL! I even bought a small keurig machine and am quite happy with the taste. I think it's the caffeine but it seems to give me a boost of energy throughout the morning hours. Hubby never drank coffee either. I just decided that it's time to make some changes in my life. Coffee is going to be one of them. Sit and sip a cup in the morning and just relax before I start my day!

6) I put my fitbit on my wrist and I'm not only tracking my steps, but my heart rate and my sleep patterns. It's interesting - I'm getting better sleep than I thought I was. Very happy to know that but need to figure out why I "feel" tired when I'm getting good sleep.

7) I am setting goals. Life goals. Weight goals. Personal goals. I'm giving myself deadlines. When in Yuma, I went to several dances with my sister and her hubby. I do not know how to dance. So youtube videos are in my future. I think I have the "electric slide" down pat! I'll give the "tush push" a try today! I'm seriously thinking about arthur murray lessons of some kind.

In 2012, I had a lumpectomy done on my right breast. It was already the smaller side and now the other side is 2 cups larger. Yes, you read that right! I cannot get a bra that fits - I wear stretchy spandex fitness bras and I always wear a shirt or vest to cover up the discrepancy. So when I get close to my weight goal, I plan to have the other side reduced. Maybe then I can wear a "real" bra again!!!

Goals. Things to strive to attain. A reason to get up in the morning and get through the day. Without stuffing my face in sorrow! I remember mom said to me once, "you always need a goal". I think I had forgotten that advice. Or perhaps my goal had simply become to get through a single day living with a diabetic spouse!

8) I plan to travel more. I am going to be horse-sitting for a friend of mine the end of this month. Yes, horse sitting, not house sitting! LOL! Then I want to go to Florida to visit some friends of mine. I'm looking for a cruise that I can take while I'm there. My class reunion is this summer and it's 1000 miles away. I want to go back to Israel this fall, maybe for 2 months.

9) I continue to downsize. Busy doing a lot of eBay sales. I have my name on the waiting list for 3 different apartment complexes. If I don't get something by next month, I will simply put everything in storage as I want to sell the house this spring. I'm ready to move. Almost all of my closets and cabinets are emptied and what's left can be packed up in a couple of days. I will move what I want to keep, then have a final "estate" sale in the house and get rid of what's left. It feels so good to be cleaning out.

10) January. Something happened to me last month and I can't quite put a finger on it. Is there some measure of time that you need to grieve? Is 6 months it for me? Was it that there were so many bookmarks....getting through Christmas, then our anniversary and his birthday.....and now I know I will be ok? Is it just time as a whole? I feel a little bit lighter, like a burden of some type has been lifted. I feel like I will survive and that it's time to get on with life. I'm a little bit happier. I think I laugh a little more often. I don't feel the need to be quite so sad so much of the time. Maybe the trip to Yuma got me back into socializing a little bit more. Whatever it is/was, it feels good and I want to keep going forward.

I think these were all very good ah-ha moments for me. One final thought. I know that I think about diabetes less and less as time goes forward. But I was talking with a 77 year old woman yesterday who has diabetes and is severely overweight. She is having foot troubles. She is on oxygen and uses a walker. And I had to tell myself to just keep quiet. Her diet is none of my business. I can't "fix" her. I can't get involved. But my heart bled just an ounce for her and what she is going through and what she must be putting her family through. Living with diabetes - does one ever truly get completely away from it? I doubt it. But perhaps we can move forward with our own lives knowing what not to do and prevent ourselves from getting the disease.

And now - back to that cup of coffee that's gotten a bit cold!

DW

A question about letting another man into my life.....

noreply@blogger.com (Unknown) — Mon, 31 Dec 2018 16:04:00 +0000

I received this comment......

When it comes to pass that you start to think about whether or not to let another man into your life, I'd like to know your thoughts. Sometimes I feel like I'll never want another person to make me their nursemaid (or a slave to their lifestyle) again. Other times I have hope that it's possible to find happiness in a shared life with someone who takes good care of themselves and so might even help you (me) to also be better and healthier and happier for the relationship. There are many different points of view on this but I'd really like to hear your thoughts as you go. Thanks again for your honesty and forthright-ness. Managing (but barely)

And you know, a month ago I would have screamed "absolutely not!" But a couple of days after my last post, my youngest sister decided that we should take a last minute getaway trip over the Christmas break. She wanted a beach. And nothing outside of this country. So we found a cheap flight to San Diego, then a beach front hotel and upgraded to a beach front room and wow! it was exactly what I needed and I didn't even know it!

She has been a widow for 15 years (compared to my 5 months) and is wise beyond her age. She said that if the right man came along, she would consider letting him into her life. However, her list of criteria for this perfect specimen is probably unattainable! LOL!!! She said that for the first year after her husband passed away, the thought didn't even cross her mind. Then she attempted to date. Two different men. Both were huge failures. And she was much younger - in her early 50s. So she quit dating altogether.

However, about 9 months ago she moved into a retirement center and she has been meeting the men there, socializing, getting involved in events and has decided that what she once thought was impossible is now at least a thought.

She also acknowledged that it would not be a thought for me and that is so true! But she told me to be open about something down the line.

So that's her wise advice. At the moment, there is just no possible way that I will ever open myself up to any relationship. As the comment said - to take on the job of caregiver again? And at my age, that is likely what would happen at some point down the line.

I miss him. I really do. I still have weapy days. I have tear-jerk moments over the silliest things. I kept a bottle of his cologne because I have to get to where I can smell it without crying. Stupid and sad. But it's all part of the journey back to normal.

I still get so pissed off about how much work I did to take care of him. Yet I would do it again in a heartbeat because I loved him. I get pissed off when I meet someone who has diabetes and they tell me they don't care - that they are going to eat whatever they want. I literally have to walk away so that I don't explode! And I do explode whenever anyone tells me they are pro-marijuana!

So to go through any or all of this again in my lifetime seems utterly ridiculous at this point. However, love is blind and we all go into a situation with rose colored glasses. I've learned that if nothing else!!!

Pretty sure my goal right now is to find happiness in my life on my own without anyone else. And I am getting there! I have an interview with a realtor this afternoon and will line up a few more in the next 2-3 weeks. I'm applying at more apartment complexes to try and find a small apartment that I can move into so I can get my house on the market. All the while I'm sorting, boxing, packing, making trips to goodwill, listing a few things on ebay.....cleaning out the clutter and downsizing. This little town will be my home base as 2 sisters live here, but I really want to travel. Take trips like we just did. Get away as often as I can. Find out who I really am - without the burden of caring for another person.

Overall, I'm doing better than I thought I would and that's a huge plus! Tonight is New Year's Eve and I'd like to wish each of you a very happy New Year. May 2019 be filled with blessings, joy and good health!

DW

Almost 5 months

noreply@blogger.com (Unknown) — Thu, 06 Dec 2018 05:17:00 +0000

I had promised that when he died, I would continue to write. But I can see why so many don’t. It is hard to think about diabetes because I truly want to completely forget about it. I don’t want to remember a single thing about it.

Yet I continue to meet people who ha be it. My 40 year old son has been diagnosed as pre-diabetic. Yes, I sort of just want to scream at him!

It is hard not to admonish people when I see their plate fillers with carbs and sugar. But it is their choice.

It is hard not to give free,unsolicited advice! But I don’t. It is their disease, just like it was his.

I think that’s one of the hardest parts of being a diabetic widow. Yep...new title. But that’s what I am. Not just a widow...but a diabetic widow. Someone who lost their spouse to this needless, senseless disease. But still...it was his disease, not mine.

I have finally finished all the paperwork, business, and legwork of death. That is a happy place to be. It just take so much time. Bank accounts were the hardest. T-mobile was by far the easiest! I’ve started ebay and am taking that ever so slowly. And I’m still sorting, cleaning, preparing to move.

But the social aspect of living is getting better. I’ve started taking art classes, going out to lunch and dinner with friends, have even taken a couple of short trips. Winter has set in and the yard work is over for now. I’m back to crafty indoor projects...recovered som office chairs, made some pillows and getting back into the swing of living.

Don’t get me wrong. I still have my weepy moments. And my crying moments. But they are getting fewer and farther between incidences. I have moments when I miss him so much I can’t breathe. I have moments when I still get so mad at him I can’t see straight! I think all of that is just normal grief. But all of it is evening out, becoming much less of my life and more of my past. You have to keep moving forward so you don’t fall into a dark hole.

My foot has healed nicely which helps. I’m hoping to start walking soon and that will help. Please pray that an apartment opens up so I can get this house on the market. It would be one less thing for me to worry about!

Bottom line...life is good and I know it will get even better. Hope you are hanging in there!

DW

Three months

noreply@blogger.com (Unknown) — Tue, 16 Oct 2018 13:51:00 +0000

Hard to believe that it has been 3 months since he passed away. I continue to learn. I continue to grieve. I continue to be surprised at life.

He and I had such a full life. Even with diabetes. I only wrote about the diabetes here and I realize now I should have written more about our overall life. It was kind of amazing. We had 20 years together. We traveled so much before he had his heart attack 9 years ago. He took me backpacking in Europe with a train pass. We did a 2 week cruise through the Panama Canal. We used to go to Hualtaco Mexico every year. He took me to Hawaii, the big 50 for my "big 50" birthday party.

The man loved buying jewelry and would shower me with gifts. Any occasion. And he loved giving me flowers. He made me laugh. Even on our very last trip in our little travel trailer....I can't tell you how many times we laughed about the little things in life, about the mistakes we made camping, or over our 2 chihuahuas.....who definitely had their own opinions about camping!

I find myself focusing on the good memories. And I think that's what we all do when someone we love has passed away. Yet there are moments when I can't get past his diabetes and the all-consuming issues it brought to us on a daily basis. The constant, never-ending roller coaster ride of highs and lows, emotional outbursts, devastating threats....that had become a way of life the past few years.

Life goes on in a very different way when your partner dies.

Snow came early to this tiny valley this year. Took everyone by surprise....as did the cold snap. I got my sprinklers blown out just in the nick of time. The pond drained, the fountain drained, the gazebo curtains packed.....and I missed him because he would help me fold the curtains and get them packed away. It's those little things that we did together. He was there holding the ladder for me. I used to laugh and think that if I did fall off of it....there's very little he could have done. But at least he was there holding on to it. I still think of him all the time.

So, I dropped a box on my foot 2 days after he died and broke it (unknown to me). That is still causing me some difficulty....but it is healing. And it does slow me down. I have my days when I just sit in the recliner most of the day. But I am making progress. Both bathrooms and 2 bedrooms, the hall, living room and kitchen have all been gutted, cleaned, painted and ready for when I put the house on the market.

Everything is either packed for storage (not much at all) donated, sold, or boxed to go on ebay next months.

It just takes time.

I think my best advice for this stage is to follow your heart. If you are sad, let yourself just be sad. For an hour or so. Make lists. So that when that hour or so are up, you have a place to go to see what needs to be done next. All the easy tasks are done on my list. LOL!!!

Break down the harder tasks into a series of smaller tasks. Clean the guest bedroom becomes something like this:

1) clean out the closet
a) 3 bags: goodwill/storage/trash
2) take paintings, art off the walls
3) putty holes - let dry overnight
4) prep room for painting/tape windows and walls
5) paint
6) rehang paintings just enough for staging

When I break it down like that, each task becomes simple and manageable.....not nearly as overwhelming as "clean guest bedroom".

And then there's the process of downsizing. Six years ago we moved from 3700 SF into 1120 SF. You'd think I would be used to this! Now I'm thinking of moving into 500 - 700 SF. So here's my process when I look at each item:

1) is it something that I use on a daily basis?
a) yes - keep
b) no, then

2) is it something that has historical family value?
a) yes - find a new family member to give it to
b) no, then:

3) is it something that I honestly need to keep?

Here are a couple of examples of that process. Flour. Do I use it every day? No! Do I need to keep it? Yep - for obvious reasons. But, I went from a 10# storage container to a 5# container as I know I will never use 10# again at one time. My next question is can I reduce to a 2.5# container? When will I ever use more than 2.5# at one time and I can always go to the store and replenish. So yep, I'm now down to just 2.5# of flour and sugar. Definitely space saving!

Another example. Shoes. ha ha! This was a tough one for me and trust me, I have shoes! Summer, winter, boots, sandals, flips, water shoes, waterproof shoes, dress shoes, tennis shoes, casual shoes.

1) have I worn them in the last year?
a) no - donate to a charity
b) yes, then

2) are they really comfortable, or did I just wear them once or twice?
a) once or twice - donate
b) comfy, then

3) think of the aging process - how likely are you to wear them at least once a week? with more than one outfit? are they a good color for a lot of different occasions? are they sturdy, will they last you for more than a year to come if worn often?

I think you get the gist of the questioning process. I'm down from 40 pr of shoes (I said I had a lot!) to 15 pairs.....which is still way too many, but it was a start for me! I had a few pairs of very expensive shoes/boots that will go on ebay. But I gave numerous pairs to a local charity. And of course, if they were worn at all, they just went into the trash!

As I continue to clean and sort, this is the process that I go through. But there are more difficult questions. IF I were to move into a studio apartment, about 500SF, then I would be going into the "tiny house" arena and that will create a whole new through process.....something in the back of my mind but something that I'm avoiding at the moment! It's so hard to imagine doing "tiny house" living when he and I had such a gigantic life in so many ways! Yet at the same time, death always brings change and I need to learn to embrace these changes.

Social life. I have to force myself to be social. I'm just not ready. Yet I realize that this, too is part of the grief process and I need to force myself to be social. I have declined so many invitations to join other people in their activities. But that will change. I have started out by taking an art class. With some people I already know and some new people. Classes are good because you don't have to force a conversation like you would at a meal. In a couple of weeks I'm flying to Arizona to an art retreat. Five whole days of art. It's a class type setting so once again, I can just sit and learn. Fill my mind with something completely entertaining (for me!).

Meditating. I have a very deep spiritual life and prayer is my mediation. I can definitely see the value in that. If I didn't have it, I would be lost. And it is one of the key components of the grief process....some type of meditation. It helps me to slow down. To take time to breathe. To listen. Three months of some very deep grieving and I don't know if I'm done yet or not. I don't think so. Something in my mind is telling me that I may never get past this in a lot of ways. Yet at the same time, I know I am moving forward and making progress towards the next chapter of my life.

In the last 3 months my life has changed in a lot of ways, yet some things have remained exactly the same as they were. I don't know what I expected but I am content with where I am at this moment. And that makes me happy. :)

DW

Replying to comments

noreply@blogger.com (Unknown) — Tue, 02 Oct 2018 13:31:00 +0000

Perhaps the best way to get caught up is to just reply to comments. Yes....2 1/2 months and I'm still busy with grief, paperwork, banks, finances, research, cables.....

calvinnme wrote:

Both of my parents died earlier this year within two weeks of one another. They were past 90, so I can't say it was a complete surprise, yet it was a shock and it was very sudden. Yes, the sluggish rate that the system moves at as far as insurance, settling estates, etc. was quite a shock. My dad died last, and the first issue we hit was his death certificate. Nobody at the hospital wanted to sign off on it. He died alone in his room in the middle of the night, but it was obvious natural causes - heart failure due to congestive heart disease. We had to finally get the family physician to sign it, and then it was another month struggle to get hold of their checking account so we could pay their bills. Now, in spite of their finances being well organized, in spite of most of the financial institutions involved knowing both of my sisters (the executors) because they often took dad to deal with his finances when he was alive, it took FIVE MONTHS before we saw any name change on any accounts. Things I never heard of - medallion signatures, having to go to court to probate my aunt's will because she died the year before and dad was too sick to deal with wrapping up her finances properly - she doesn't even have a headstone yet! Now mind you, my aunt never married and had no children - who would possibly legitimately contest her will??? Yet the system demands it. I can only imagine how rocky this would have been had my parents not sold their home of 44 years six months before they died. Oh, and the funeral home and cemetery - the biggest in my home city where EVERYBODY is buried - put one plaque with the wrong name on it across my parents tombs in the mausoleum, as if just one morbidly obese person was buried there rather than my parents in adjoining compartments. I do feel for you as you wrap things up. It's good that you have family nearby.

I have started telling everyone to put $5K cash in a lock box at home. Simply because nothing can be done for 10 days or without a death certificate....whichever is the later. Then get a LIVING beneficiary on everything! My biggest shock was that while in grief, I had to change the beneficiary on everything of mine because he had been my beneficiary. A will means very little when it comes to a bank. A financial power of attorney is null after death. You think you have it all figured out.....and then you find out that you don't! And honestly - you don't need any of it when you are recovering from the shock of losing someone you love.

Managing wrote:

Are you starting to feel life on your own terms is taking place yet? Your days are filled with things of your own and no more the degenerative and heart-wrenching daily events of watching the man you love draw closer and closer to death?I know you are caught up in lots of "admisistrative tasks" as well as the surreal aspect of life without him, but if you take a moment to yourself, can you feel a little bit of "freedom" in this new existence on your own terms? Sorry if this sounds voyeuristic. I just imagine that there wil be some "release" of some sort when it is all over.

Yes and no. That is a hard one to explain. Sunday, I started cleaning and painting his bathroom. Two full days later and I'm almost done. But it's been 2 days of yelling and screaming. The end result of gastroparentesis is a whole lot of explosive diarrhea and now matter how much you clean at the time of the incidents, there is residual left over. I put on a face mask, plastic gloves, very old clothes and was armed with about 20 different cleaning chemicals. After gutting the bathroom of everything, I scrubbed, sanded, puttied, patched, cleaned, painted, caulked.....and it almost looks good. But in my head, I know that I merely painted over whatever it is that would not sand off.

And during those 2 days I certainly said enough bad words about diabetes, about him, about the entire situation. But the relief is in knowing that I will never do this again in my life. So in a way, it was healing. And also healing in knowing that he will never do this again. His stomach pain is gone. His inability to digest food, the vomiting, the diarrhea, the smoking marijuana daily....it's all over.

I did not know that when you smoke marijuana, there is a film that gets on the walls, cabinets, floors. And when you get into a hot, steamy shower, the steam turns that film into a liquid that looks like a bottle of caramel syrup exploded on the walls. And that when that "syrup" dries, it hardens like brick an you literally have to sand it off the walls. Oh! The things you learn that you don't want to know! It was a lot of very hard work getting those walls clean and I am NOT that young!

Managing also posted:

Your honest and helpful blog is a saving grace to me. Now too, knowing how much trouble everything is to deal with and then in the future, will you be able to just focus your memory on the good times and the great husband that you had before Diabetes wrecked him. Those things coming from you in your honest and loving way mean the world to me in my similar struggle. It is still True Love even when the person you love is so difficult that you can't even be around them. You honestly portrayed that in your blog. THANK YOU SO MUCH! Life is a strange thing with horrible and wonderful all mixed in together. I wish you an abundance of wonderful as you move forward. Don't choose anything but that as you begin allowing new things into your life. Funny thing is I think these blogs last forever so this and what you put down in the future will help people for long afterwards too. You are a Godsend to all those searching for help in this horrible thing - Diabetes. With prayers for your peace and clarity to follow the path ahead as well as thanks to God for you sharing with us,

Thank you for your kind words. Obviously, I'm not focusing on the good times just yet. But I am getting there. It is still one step at a time, one minute, one hour, one day. I'd equate it to childbirth. In time, you forget the pain and only remember the joy of the new baby. I'm hoping to enjoy my new life.....once I get there. And I know that will happen. I also know that it just takes time.

I've sold the travel trailer to a wonderful couple who live just north of me. New lifetime friends. I've had a garage sale and the "first layer" is gone. I've finished sorting out cables and trust me, what's left has been labeled! I'm the only house in the world that has a p-touch label printed on every cable inside! But I know what they all go to!

I'm still working on the computers. I'm still working on his out-of-state bank accounts. About $4K that I literally have no access to. He made his son the beneficiary. They were estranges. The son is refusing to contact the bank. All I can do is wait. On the other hand, if $4K is the price I have to pay to be done forever with his very ungrateful children....I'm fine with that. Financially, I am good. Not necessarily because of him, but because I worked my entire life and made some good solid decisions in that arena.

I am still in the process of downsizing and on the wait list to get into an apartment in a complex about 2 blocks from me where my youngest sister lives. (She pops in twice a day and my other sister is here every day). When I get an apartment, I can start the next phase of my life. The second bathroom is up for painting this week, but that will be a much easier task! Then I will take a room at a time, pack it up, patch and touch up paint and hopefully get down to apartment sized living. In the meantime, it's October, and there is so much yard work to be done. All of the gardens have to be cut back in the next 2 weeks and the outside winterized. We have a gazebo and a pergola with other outdoor living spaces. It all gets packed into the garden shed. The small greenhouse has to be winterized. Today, I'm digging up Iris and Day Lilly bulbs as they need to be thinned out this year.

So life does go on. Gardening is wonderful therapy. I still love it more than anything. It's a time to talk with God and to meditate and to be amazed that in October you can still have fresh new blooms. Sort of a metaphor for life. Something can bloom at any time!

DW

Widow's brain

noreply@blogger.com (Unknown) — Fri, 10 Aug 2018 10:56:00 +0000

Well, there's a new term that I had never heard! But it explains so much of what I've been going through. You can google it. I thought this was a good article (click here)

A few days after he passed away, I received a sympathy card from a dear elderly friend who lives about 150 miles away. I couldn't figure out how on earth she had heard of his passing. I picked up the phone to call her and thank her for her sweet note. She said that I had called her the day after he passed away. I had absolutely no recollection of making that phone call. I still don't remember it. And I probably never will.

Yesterday, one of my sisters said to me that I was kind of funny after he died. I would say and do the strangest things. So I decided to google and that's when I first saw the term "widow brain". Who knew?

Yep, I think I might serve as a textbook case. I knew I was in a fog and I just allowed it to happen. I didn't care who did or said what. I didn't really understand why I didn't care. I remember so many people surrounding me and I just wanted to be alone. I remember watching hours of Hallmark Christmas movies.....and I never watch Christmas movies in July! It was simply my brains way of insulating itself, protecting itself.

Then today, someone posted this on facebook:

and that hit me hard. It is so true. Every. Single. Thing. Changes.

No matter how much I hated his diabetes - we still did things together. We were a couple. And everything is changing/has changed. I even lost 10 pounds.

So I am still learning. And while the diabetes aspect of my life has ended....the repercussions of it will never, ever end. I wish I had known about widow's brain before he died and maybe I did - I just forgot that I did. LOL! Yes, the humor is starting to return.....ever so slowly. Life is getting into a routine. I get up and walk with my sis, I spend a couple hours tending the gardens, I spend about 4 hours doing paperwork and then I do something I find fun.

One of the rather important things is once you get done with estate papers (to the point where you are just waiting for responses and more paperwork) you have to re-do your own paper work. My will, medical and financial power of attorney all needed new beneficiaries. My bank accounts, life insurance....all need new beneficiaries. So just when you think you might be done with all of "his" paperwork, you have to start in on all of your own paperwork. And there are days when it seems endless. Four hours a day because sometimes, just one entity takes four hours. That's how much time I spent trying to close out his 2 phones and 1 sim card for wifi hotspots while traveling took. And then he hand another carrier with a sim card for traveling. I'm grateful he had an app that had all of his accounts and passwords in it - that has helped immensely!

This week, I think I'm finally coming out of my widow's fog a bit. I have started a daily diary on paper. I write down what I need to get done today (and sometimes tomorrow). I have daily goals. I am keeping copious notes of who/when I talk with someone and what they tell me. I have follow-up tabs on pages that need to be taken care of down the line. If I don't do that, I know I will forget. I should have been doing it since day 1 - but I didn't!

I'm feeling a little more organized. I can't begin to look at the entire task ahead of me. Downsizing. Selling the truck and travel trailer. Selling the house. Keeping up with the flower gardens. Giving up so much of what we both loved. So I am breaking it down into simple tasks. Do this today. Find this today. And I think it is helping.

They say don't make any major decisions for a year. But I cannot keep this house. It will financially drain me. I have put my name on a waiting list in an apartment complex where my sister lives. There are no vacancies and a year waiting list. I know the management so there's always a chance my name might get bumped to the top. Our mom lived there and they loved her.

Monday it will be 4 weeks. And I still don't have the life insurance paperwork. That is a surprise. The fact that it has taken this long just surprises me. My advice....have at least $5k in cash in a lock box at home. You will need to pay for funeral expenses, ambulance rides, health insurance co-pays, utility bills (they don't seem to stop), food, gas, etc. I am surviving. But barely. Once the life insurance gets here, I will be just fine. But that could take another 6 weeks.....a total of 2 1/2 to 3 months after death. Yep, that is a surprise!

And this is a time when you just don't need surprises. Not like that! But it will get better. I do know that. And I am blessed beyond measure. I have 2 sisters who live right here who are here almost every day. I have a brother-in-law who will drop whatever he is going at the drop of a pin to come help me. One of my sisters is a widow and has been through this and has been gently counseling me. So I know I am so much better off than so many.

I am learning that you cannot live on "what-ifs". You go forward with what is. You deal with life one step at a time and I know that it won't be long before there is a new, different beat. Things will go on - but they will be different.

Someone asked me the other day, "what's next for you?" and I said that I didn't know. It's something that I will have to figure out. But that's a good question. What is next in my life? Do I move into an apartment and just live a daily life? Or do I go do something extraordinary? There is a light at the end of this tunnel. I'm not seeing it just yet, but I'm learning a little about why I can't see it - perhaps widows brain is more like widow fog - you just can't see it yet.

No one ever knows how to grieve.

noreply@blogger.com (Unknown) — Fri, 27 Jul 2018 22:00:00 +0000

I think I've grieved every loss in a different way. My dad passed away 26 years ago. That was the first, the hardest, the longest. Mom died 6 years ago. I lost my best friend, my counsel, my support. And I grieved harder than when dad went.

Last fall my son died. I honestly thought I would die. But then my other son got so upset that I had to snap out of it and "be here" for him.

And now hubby. How do I grieve his passing? There have been many wonderful moments in our life. I posted the bad ones here. I posted the reality of diabetes. I truly want to just forget all of that and focus on the good. I want to remember him as the man I loved, the man I fell in love with - the stable, sane, good sugar level guy. Yet it is diabetes that killed him.

The death certificate showed the reason for death as "respiratory failure". And chronic heart failure as the secondary cause. Which is correct. He had a heart attack. And then he quit breathing. The very last thing was that he just stopped breathing. Respiratory failure. You and I know that it was the high sugar content that ate away at his body, clogged his arteries, caused the heart attach which caused him to stop breathing. But to the world - nowhere does it say diabetes. How sad.

And I have absolutely no say in what goes on the death certificate. That is left up to the hospice doctor. And they admitted him as a chronic heart failure patient. Because that's what he was discharged from the hospital as. Because he entered the hospital due to a heart attack.

It makes sense. But is it fair?

I am grateful for his sake that it is over. Do I miss him? Unquestionably. Do I miss his diabetes and all of it's complications? Of course not!

I have moments when I want to crawl in a hole and become a recluse. I want the world to go away. Yet I know I can't allow that to happen. I have forced myself to allow friends and family to visit. To answer emails. To appear "ok". Life has become a long twisted nightmare of notifying the world of his death. Utilities. Banks. Insurance. Vehicles. Phones. Death comes easily but deleting the life that existed is nearly impossible at times. I want to give up. But I keep plodding along. I want to just quit. But I know I can't.

Is this the hardest thing I've ever done in my life? At the moment it seems like it is. But I know in the overall scheme of things it isn't.

His daughter calls and wants comfort from me. Yet I think I'm the one who needs to be consoled. How do you comfort someone else in the midst of your own grief? I don't have the answer to that.

I've hit the anger phase. For a million reasons. I know the steps in the grief process and I know that I will eventually go through them all. I just hope the anger phase is very short. I'm trying hard to focus on the good thoughts.

Being deeply religious - I know my Lord will sustain me. I know that it will be OK in the end. I know HE will take care of me. It's just the nearly impossible task of getting there.

As a funny aside, hubby was a computer programmer, a genius in 3D printing arena, and a wizard at designing with led lighting. I now have the task of putting parts together. Where's the power cord to the Kindle? What does this computer chip belong to? I know these are led light strips....but what goes with them? Google has become my best friend, ebay might be an even better one because I can give it a non-descript definition and usually find a picture of what's in my hand!

What will I do with everything? Sell what I can on ebay. Then a garage sale. I have to clean out and downsize and then decide if I am going to sell the house or keep it. Decisions. Something that seems to take place 24/7 at a rapid-fire pace right now. I'm most likely going to sell the travel trailer and truck. I can't see me trying to hook it up myself. I was a miserable failure at backing the thing up. And I'm not sure I want to go travel alone right now.

He was cremated. His wish. His ashes will be spread in the mountains where he grew up. His brother is coming Monday to pick up the remains and handle that for me. Not sure I could do that. So many things to think about, decide upon, take action. Right now, closing cell phone accounts has been the worst....and it's still not done. But I'm getting there.

I hope you have a support system in place. My sisters have been here daily. My friends visit, call, text. The cards have been pouring in -from people I haven't heard from in 20 or 30 years. That was surprising! I have an amazing support system and am very grateful for that.

Many more decisions to come in the future. I know I will make mistakes. I will take my time on the major ones. The minor ones will fall in place along the way. It really just takes time. Not much you can do in the first 10 days. Not much you can do without a death certificate. Plan your days. I get up and walk with one of my sisters. Then I garden for an hour or so. Then I come inside and do a couple of hours worth of paperwork. Then I run errands. Next up is something enjoyable or relaxing. Lunch with friends, an art class - something that brings me joy. Then I start my evening with a movie on and a box of things to sort beside me, my laptop in front of me and a yellow sticky pad next to me. It seems to be a good method of balancing life, getting things done and getting through the grief process.

Life goes on. But it's not the same. I am still learning every single day. We should have done a better job of preparing for this. We should have had $5K in a safe at home. I should have paid more attention to simple things like setting up Plex, what to do if the door bell quits working due to a storm.

Yes, we had the worst storm Monday evening that they've had in 30 years. Flooding all around me, but I was lucky that there was no damage here. Yes, life goes on. I will be just fine. But I hope those who have been reading my blog will take this week to prepare themselves as though this was the last week you had on earth. Get the paperwork in order. Make it easy for your spouse. Don't delay. I thought we had another year. We didn't. Take advantage of my life and make yours simple. Because even when you are gone, your loved ones are here and perhaps not in the best mental state to make all the decisions and choices that they will be forced to make.

But no matter what - it will be ok.

DW

PS. I just checked my yahoo email and I hope I have responded to those who wrote me. If I missed you, I'm sorry. Thanks to each of you for your kind words and prayers. I pray that your life will be blessed.

It's over

noreply@blogger.com (Unknown) — Wed, 18 Jul 2018 07:36:00 +0000

He passed away Monday evening.

Because he was on hospice care, I kept a log in their manual. I'll post what I wrote:

7/16
9:55 am I called hospice. No one had called or come out since Friday night when we registered with them. We had requested pain meds and anti-anxiety meds. And this morning, we need to refill his nitroglycerin tabs

He got up and walked down the hall without oxygen to the kitchen. I fixed him breakfast. We sat at the table and chatted. He went to the bathroom, changed his shirt, brushed his teeth, shaved, took his meds and put his contacts in. I thought, "wow! we're going to have a good day!"

11:45 am. He lost consciousness for 2-5 minutes. Glucose 110. H20 99. HB 65. I called again and said I needed someone here ASAP. My brother had just arrived for a visit.

Called both sisters and brother=in=law to come.

11:55. Donna here. She was the nurse. BP 80/40. Ox 70 with CPAP. He asked for morphine. He had refused it before. He pulled me down close to his mouth and said, "if my throat swells shut, don't do anything to stop it." His pain was at an 8.

As a note, the last time he had morphine was 2000 and he had vomited violently and his throat had swollen shut. So he had declined it up until now.

I said to him, "you know what this means?" and he said, "the end".

The nurse started him with a low dose of diluted for pain and lorazepam for his anxiety. She left to go get oral morphine

1:48 gave him .3 ml morphine. he dozed off.

2:28 he woke up, tried to sit up. Said he feels fluid building in his chest.

3:02 .3 ml morphine. pain at a 4+

3:22 pain at a 6. took a nitro tab

3:48 pain 8, radiating from his chest down both arms

4:00 gave him his dilaudid and lorazepan. Pain at 8. .3ml morphone

4:07 pain still at 8, no relief

4:17 called hospice, pain still at 8

4:29 pain at 6

he calmed down. Sent my sisters and bro-in-law home. My brother stayed.

5:08 pain at 8 .3ml morphine

5:19 pain at 8. nitro tab

5:40. nurse called. She said to increase the morphine to 1ml - a full syringe. It goes under the tongue to dissolve. It was ok to go ahead and give it to him now. I asked him if he wants it and he said yes. Given at 5:45 pm.

He said that when he lies back in his chair (he had been in the recliner all day) that it feels like his lungs are filling up so he stayed at about a 30-45 degree angle. He was having lots of sharp shooting pain episodes. You could tell because he would burrow his brows and wince from the pain.

6:23 Nurse called. His pain was 7-8

6:33 h2o 99 HB 80. He didn't want morphine

6:46 pain still at an 8

6:57 intense pain, gave him a nitro tab

7:00 he had another episode - jerking movements, rolled his eyes back up into his head, grabbed his left chest

7:05 he asked for morphine - gave him 1ml

7:10 I was holding his hand, sitting next him. He started clutching my hand really hard and I said, "sweetie, you can grab as hard as you want." He looked at me with so much sadness in his eyes, then he clutched his heart, came forward in the chair and I could tell he was in excruciating pain. I was crying and I kept apologizing that there was nothing I could do, nothing else I could give him to help him. He went into a seizure and then he quit - everything quit. He stopped breathing. It was over at 7:15 pm.

I thought I was going to die right there with him. I cried and cried. I was so helpless. He had been in so much pain all day long and there was nothing anyone could do for him. My brother, sisters, brother-in-law had been in and out of the room. I didn't leave anymore than I absolutely had to. I just kept talking to him, telling him it was going to be ok. Telling him how much I loved him, how good he had been to me.

I felt sorry for the nurse. She was there with us most of the day, but she had another patient in a neighboring town and she had left about 6 pm. I think she stayed past her quitting time.

I'm not sure what the death certificate will say, but it will be his heart. Not diabetes. That's so unfair. Yet it was his heart that gave out. I know that.

The night nurse came to check his vitals. His time of death will be listed at 7:39 pm. She called the mortuary and it took them about an hour to get here.

I saw with him the entire hour. I had time alone to say the things I wanted to. I had already said them to him a number of times in the past week....but I needed to say them again. I know that in the end, he loved me. He had made peace with his children and his brother. He was ready. But not being able to relieve his pain is something I will never forget. I was not prepared for him to suffer that much, that long. I had thought that with hospice, they would do more to comfort him. But they couldn't.

I had to call his son. I couldn't get ahold of his daughter so asked his son to do that. Called his brother who had been texting me all day. Those were tough calls to make. His daughter called me. Each time I had to go over the above scenario. I was unprepared for that.

The hall back to his room is narrow and it's a sharp corner. They couldn't get the gurney into the room. I couldn't watch. I know they took a cot in, put him on the cot, and somehow got him outside. I don't know why - but there are some things you just don't need to see. That was my line. I stood outside and waited for them to bring him out. That was probably a mistake. But for whatever reason, I was suffocating and I couldn't stay inside the house another moment. My brother was at my side. My brother-in-law was helping get his body out. Watching his body leave the house will probably be imbedded in my mind forever.

And then I went numb. I just felt nothing. Probably because I was drained. I sat in my recliner surrounded by my siblings. I wanted to be alone. That wasn't going to happen. My brother-in-law finally left to go home and take care of their cats and dog. My brother stayed til 10 pm. Then my 2 sisters asked which one should stay. One had taken a pain pill and I didn't want her to drive, the other lives 2 blocks away, so she went home. I tried to sleep in my bed, but ended up in the recliner. I did take a sleeping pill. My brain just wouldn't shut down.

This morning my sisters took me to breakfast and then to the mortuary. He wanted to be cremated. He did not want a funeral, viewing, obituary. He made that part simple. The contract was short. Yet still, $1500. I paid cash. It will take 5 days to get the death certificates and there's not much one can do until then.

Got back to the house and sent my sisters home. I needed to be alone. I needed a long hot bath. I think I had a shower Friday morning before I went to the hospital to bring him home.

Then I tried to get into his computer. He said that there was an app called 1password on his desktop and all his passwords were in that. Well, that app wasn't there. I couldn't get into his iPad or laptop. But I managed to get into his iPhone and from there I finally (after 4 hours) found an app with a different name that had his laptop and iPad passwords. I'm in all those....but I'm unable to access his bank accounts online. So even though I thought we were prepared....we weren't. Lesson learned.

Someone asked me if I would keep blogging once he passed. I'm not sure. But I think I will for a few days/weeks. It's good therapy and I do need to continue to keep notes until this is complete.

It's been a very long 2 days. It's 1:30 am. I can't sleep. But maybe now that I've written this down, I can let go and won't have to repeat it over and over in my head.

DW

Why do you wait til someone is dying to visit them?

noreply@blogger.com (Unknown) — Sat, 14 Jul 2018 14:46:00 +0000

Isn't that a good question? I think it's to relieve the guilt on the part of the visitor, not anything for the patient. My last post was Wednesday. Thursday, both of his daughter, son, his wife and 3 of 4 kids came to visit. My sister, her hubby, my brother, his wive and 2 kids came. It was a complete total zoo.....and NOT what he needed that day.

But I can't deny them. I can't tell them this is not a good time. So I let groups of 4 in at a time. UGH!

His son, the PharmD - the guy who has a doctorate in pharmacology, acted like I didn't exist. Seriously! He told his dad that he needed to have the defibrillator implanted. "That's what's best for you, dad." And he has NOT seen is father in 2 years! Yep, I just wanted to spit nails, but I kept my mouth shut and smiled.

His daughter did her usual drama thing, "oh daddy, oh daddy, you have to promise me you are going to get well. You have to - for me!"

Enough said about them?

The dynamics were interesting to watch. His family was very dramatic, sad, acting like they were at death's door or a funeral. My siblings just talked to him like it was a normal day. Told them things they were doing or working on. Had a very interactive conversation with him as though we were home, sitting in our living room.

That afternoon, he told his docs that he did not want the life vest and he did not want the implant. We had done some research. With the implant, you cannot use a cell phone, iPad, ear buds within 6" of the implant. He uses earbuds all the time and loves to rest his iPad on his chest to watch movies (due to his poor vision). We talked about it. I told him the choice was his. I don't know what I would do if it were me and I told him that. He made the decision and while I'm not sure I agree 100%, I have to support his choice.

I suppose when it's your heart and someone tells you the vessels are 100% blocked, you have a big enough scare without considering the options for surgery. Would his kidneys survive? Would his heart survive? It can be minor, but it can also turn into a major operation. He has opted not to do it. And with that decisions, there just isn't anything else they can do for him. So he was discharged home yesterday under hospice care.

The discharge process took from 10 am to 2 pm. Mostly waiting for one department or another to come and have him sign their set of papers. We were home by 4 pm and hospice came. They had an intake person who was here asking questions until 6. Then an RN came and did her complete evaluation and didn't leave until 8 pm. After that I still had to run to the drug store and buy a pulse oximeter. I had no idea that they cost $65!!! And then go get a few groceries. I got home at 9:15 pm and then had to deal with the pups.

All night long they whined and whimpered. They wanted in bed with him. I have told him for years that he cannot let them sleep with him in case something like this happens. Well, he never listened to me. After a night with very little sleep, I wasn't in a good mood this morning. His brother is here (lives about 800 miles away) and staying for a few days. The 3 of us came up with a plan that the pups will go home with the brother. Hubby will get himself well enough to take care of them and we'll go get them. That will give me some relief because I told both of them that there's no way I can care for the dogs and for him.

I know it will depress him something terrible and he will miss them horribly. But one has to look at the overall situation. He is a "fall risk". We now have oxygen lines throughout the bedroom. He does not need to be getting up in the middle of the night to tend to the dogs in his condition. We tried having them sleep in my room last night and they just whined for him. Literally whined all night long.

I'm letting his brother help him this morning while I take a bit of a break from it all. I'm just so exhausted that I can barely function. Health wise....he had a bad night. His oxygen level is good, but his heart is beating about 112 and that is making him hot. We have the AC set to 70 and I'm wearing a jacket (it's about 95 outside!). We asked hospice for anti-anxiety drugs and pain meds. I don't know if they are coming back today, or if it will be Monday. The intake people didn't know.

I'm taking this one step at a time. Not sure what else you can do. I don't like the idea of hospice staff coming and going. It feels like an intrusion into our life. I'm a pretty private person. I don't know how I feel about people coming when there is a "death call". He needs to see his family and his friends.....I just wish they would come on a regular basis.

Today, I'm puttying and painting the slat wall in his room. Then I will put up shelves. For all the medical supplies they are bringing in. So I should back up. Thursday night, 2 of my sisters came over and we gutted his room. Replicated what he had in there out in the garage. He has a 3D printer and does a lot of electronics. We had to. With hospice staff and oxygen....there just had to be more space. That left a slat board wall empty. Today I will get that set up and then we have to move his computer and all those components to another table. I can remove a huge table and get a recliner in the corner as he's not comfortable in his bed.

It's an interesting concept that life goes on when death is in the room. Will he improve? No idea. He could go like this for a few years. He could die today. But the rest of life just keeps on going on. I will try to update more often because keeping notes is good therapy for me - and it gives all of us a record of what the last days are like.

DW

100% blockage of heart

noreply@blogger.com (Unknown) — Wed, 11 Jul 2018 09:47:00 +0000

The actual words the doctor used were "100% blockage of natural vessels". What are "natural vessels"? They are the veins in your heart that you are born with. That is what his angiogram showed. The 3 bypass veins have some blockage. They are too fragile to put a stint in. In order to clean out the plaque, they would have to go in with a DRILL and literally drill out the plaque. Instead they are going to use drug therapy to try and increase the blood flow in his heart.

Which is at 30%. So during the angiogram they were not able to stint anything.

He probably had another heart attack around 7 pm yesterday. I had come home. He was resting when I left. I cannot drive at night. It is 3 am. I cannot sleep. I have a bag packed to go and stay. I swore I would never do that again. But I will.

Is he dying? This time? Has he died and they haven't called me yet? It is nearly impossible to keep from having panic. I honestly do not want him to go just yet. We had such a wonderful time overall on this last trip. But I don't want him to suffer and with that much blockage, how can he not?

A little before 7 pm last night I called him. I face-timed him as I wanted him to see is beloved chihuahuas. He said, "can I call you back? I'm having a really bad time right now and I have 8 people in here with me."

So I sat here for 45 minutes trying to decide if I should drive back or not. An hour drive. I kept waiting thinking he would call back. He didn't. I called my sister. I packed a bag to go and just stay. After 45 minutes, I called again. He answered and turned on face time. He said he thought he had gotten over heated and that brought on severe chest pain. They brought in a fan, re-hooked up his nitro drip and were adjusting meds. He had gotten sick to his stomach. But he was better. He did not want me to come up. He wanted me to get a good nights sleep. And honestly, I was so completely, utterly exhausted I promised him I'd just go to bed. Which I did.

And now it's 3 am and I'm wide awake. And can think. Was that another heart attack? More damage? How can he possibly survive this?

His brother is driving about 900 miles to come see him. I have called his daughter who has pancreatitis and just got out of the ER and isn't well enough to drive an hour to come see him. She has called her brother who is estranged from his dad at the moment. Perhaps this will remedy that? I really can't worry about that dynamic at the moment.

30% heart flow. 35% kidney function before they injected him with dye (they will run another kidney function test later today), 100% blockage of his natural veins. Partial blockage of his bypasses. My life will change one way or the other.

I know that I have to stay positive around him. So yesterday afternoon we sat and planned our next camping trip. For late October. I told him he should be all well by then. We decided where we want to go - places he wants to see. I called to make reservations at a site we had heard about and he was so happy that I was able to get us in (sometimes you need to book a year in advance for these spots). I realize that I may have to cancel, but it kept him motivated yesterday. I have learned that you need a goal in life to keep you going. I never dreamed that a camping spot would be a "goal"!

I have moments when I go completely numb. I can't process anything. Usually when the doctor is giving us more information. I know that's denial. Pure and simple. I have been telling everyone that he will be fine. When I woke up I realized that he won't. It's time to tell people to come say their good byes and if he somehow survives this time, they can come say them again. At this very moment I don't think I have the emotional and physical strength it will take me to get through today.....but I also know that it will come from somewhere. I'm leaving as soon as it gets light outside.

There are moments when I go through the entire house in my head, rearrange everything so we can get a hospital bed, oxygen tank, etc. in his room. My neighbors are really young and have offered to help. I will take them up on that one when the time comes. It's not "if the time comes", but rather "when the time comes." If he even gets to come home.

How many more heart attacks can his body withstand? I don't think there is an answer to that. Yet it's one of the zillion questions you ask yourself at this very moment. We say goodbye to each other every time I leave the room. I wonder if he will still be there when I come back.

This hospital has been amazing. The staff is incredible. They are in his room every 10 minutes if not more often. We've never experienced that. His every need is being met. The bed works! All of the machines work. None of our past problems with hospital stays. We have even joked about it. But it is a really nice thing when you don't have to be dealing with equipment failure. When he had his spinal fusion surgery, he would call me at home to call the nurse's station because his call button wouldn't work. At this hospital, I already trust them to be there checking on him every 10 minutes. He knows they will be back. That definitely relieves a level of anxiety for both of us.

When this moment arrives, everything else in life stops. I literally have no appetite. I put my phone on do not disturb when I am with him. I am basically writing this so I don't forget. You cannot stop the "what-if's". They swirl around in your brain non-stop. But you simply don't answer them. They just hang there. Then you tell yourself and him and everyone around you that we just take this one step at a time. Get him to ER. Get him to a cardiac hospital. Get the angiogram done and see what the results are. Get the new medications in him and see if he has an allergic reaction, see how his kidneys handle them, see if he has more pain. Wait for the next suggestion from the doctor.

After his angiogram yesterday, the surgeon said, "we do not know where the heart attack is coming from." To me this meant that there is no single spot of blockage, nothing they can directly track the heart attack to. But with 100% blockage I'm thinking that it came from everywhere. There is no single spot.....it's his heart stopping. With 30% blood flow, oxygen is not getting to his brain. Is a stroke next?

Then I remind myself that I cannot do the "what-if" game. We simply take this one moment at a time. Today I will start calling family and tell them to come visit. That's the next step. Saying goodbye when you don't know if it's goodbye. Really hard to do.

DW

He had a heart attack this morning.

noreply@blogger.com (Unknown) — Tue, 10 Jul 2018 01:28:00 +0000

It was major. I woke up about 5:30 am and he was coughing so hard I thought he was vomiting. I went in to check on him and he said, "I think you are going to have to take me to the hospital." I said to let me get dressed. When I went back he had tried to get up to put his shoes on and he couldn't and said I needed to call 911. Which I did.

They took him to the local ER and I was right behind them. They did a heart enzyme test called torponin. I had never heard of it. Normal is .02 and he was at an 8. By 2 pm that had gone up to 81 and it will continue to rise for 24 -26 hours after the heart attack.

The local hospital wanted to transfer him by ambulance to a facility about an hour away that has a cardiac unit. He did not want to go. He wanted to come home and start palliative care. He had an excellent physician who told him that he could do that, but he would surely die. He thought that it could be something quite simple like just getting a stint and he could be back home in 2-3 days and not suffer.

So off he went in the ambulance. I'm glad he agreed. Nothing worse than watching the person you love suffering.

I came home, gathered a few things and one of my sisters rode up with me while the other one followed in her car. Incredible sisters who drop everything at a phone call!

They did tests all day long. Excellent care team - I'm so impressed. They worked first to get him comfortable, breathing with no struggle and as stable as possible. 3 or 4 EKGs, a heart ultrasound, so many labs I can't count them. They need to do an angiogram. That's the test where they run dye through his heart to see where the blockage is. The dye is extremely hard on kidneys and can cause them to fail. So they decided to hydrate him overnight with iv fluids and do the angiogram in the morning.

We had rounds of discussions about this Humulin RU 500. I was advocating for him every second of the way. I had grabbed his and took it with me. At first they were going to convert the 100 and administer that. I told them about past problem we've had with that. True to form, the hospital pharmacy does not stock RU500. So finally it was agreed that he could use his own, but they will inject it and keep it in their pharmacy. I'm fine with that! I think the clincher was when I told the cardiac MD that he had crashed on the operating table during his spinal fusion surgery.....they decided I was dead serious and knew what I was talking about.

Everyone was pleased and impressed with my spreadsheet of every lab he has had done since 2006. They couldn't believe it. I also had lists of all of his medications, his allergies, his medical history with dates.....I doubt they've ever had a patient so prepared. But I have learned that if you present all that - they know that you know what's going on and they pretty much have to be honest and up front.

And I made him be honest about his marijuana edibles.

Things are changing in the medical world. They will honor his DNR. So if he has a major heart attack, they will not put him on a ventilator, etc, trying to force him to stay alive.

And I stayed true to my promise after the last hospitalization. I drove the hour back home and will spend the night here. I will go back tomorrow for the angiogram.....then I will not be going back every day. I just can't. I am 9 years older than when he had his open heart surgery. I now know how important it is that I take care of myself.

If you read my last post, you know that we were expecting something like this to happen. Mentally, we were ready. There was no panic. We just went through the drill of getting things he might need while in the hospital, making sure the pups were taken care of, taking things that I might need for the day, grabbing the RU500 and needles. We had just talked yesterday morning about his symptoms and how close I thought he was to having a heart attack.

He is not stable tonight. He could have another heart attack overnight. We are both ok with whatever happens. I told him how much I will miss him. He told me things that he wants done. No matter what happens, it will be ok.

I'm going to get a good night's sleep so I can face tomorrow.

DW

I want to go dancing.....

noreply@blogger.com (Unknown) — Sat, 07 Jul 2018 02:06:00 +0000

Managing wrote:

What really sucks is that no matter how many things you do to keep yourself busy you are still kind of forced to be alone as the spouse of a chronically ill person. I want so badly to go dancing with a man. To go on little adventures together instead of just sitting in the house with a blaring TV in order be with him. . . and him dozing in and out of sleep anyway. I am very lonely. Friends just don't fill the spouse gap. I think I will always be mad at him for not caring enough about my quality of life to even TRY to take care of his health so he can do things with me. He has given up on life. And in doing so, because I will not go the route of having an affair in order to have some of that which I miss so badly, he has made it so my life is now relegated to a sad and depressing and weird home life. WAY more sedentary then if I were alone or with a spouse who even just cared to TRY to consider somebody else beside himself.

I get this. More than anyone can imagine. I used to do ballroom dancing. I want nothing more than to go dancing. But it's not going to happen.

Being a caregiver is an extremely lonely task. Not only do friends not fill the spouse gap, they often don't get it. Especially if the spouse is capable of putting on a good front for a short period of time.

I have my sisters. They get it. They totally understand. But I can't go dancing with them! LOL!

Yes, he has given up on life. But I refuse to. I am fighting tooth and nail and refuse to go down with this sinking ship!!! We are camping. I am forcing him to get out and go and yes, it may kill me before it kills him, but we are doing it!

We just got back from a 3 week trip to the ocean. I LOVED it! I took long walks on the beach. I hunted for rocks and driftwood. I sat and watched the waves. I went to little boutiques and gift shops in beach communities.

He sat in the camper and watched movies. He was perfectly content.

HOWEVER - it was not utopia by any means. He has had the worst case of ketoacidosis and that sweet, sickening acetone body order just about did me in confined with him in the vehicle driving home! I kept suggesting that he drink more water. He definitely needed to hydrate. I almost choked at night with the smell in the camper. I'd crack my window open and breathe in the fresh night air. If you have never experienced this smell - trust me, you don't want to.

He had more than a few lows. Too out of it to get his glucose tabs.

He would sit up at night because his back hurt. Of course - in a camper - every move he rocked the boat!!!

He popped nitroglycerin tablets like they were candy. He had such problems with any type of altitude. At one point I said that we were lower than where we live and he said we had been lower and he couldn't adjust to getting back to his normal altitude.

So - here's my take on all of this.

His BUN is going up. That means that his heart is not pumping enough blood through his kidneys in order for his kidneys to cleanse the blood. Sort of a catch 22 situation.

He has developed a nasty cough. Congestive Heart Failure. Because his heart is not pumping enough blood and it is backing up in his lungs causing fluid.

I am watching for all of the tell tale signs of a heart attack - I think he is setting himself up for one.

We have been home for 36 hours and he is still unable to adjust to the altitude - which isn't much!

On this trip, he could not see. He could not help me with traffic. So much of the time he said all he could see were blobs. A forest looked like blobs of green.

He is losing his hearing. He got angry at everything (dementia?) and I had to repeat over and over what we were doing, what our schedule was, what was next.

I think that's what bothers me the most. We are planning a long trip this fall and he had told me he had made reservations at this one place I really wanted to stay. A few days later, I asked him to verify our check in date and he said he didn't make the reservations there. I told him the he did. He kept telling me that he didn't. I finally got ahold of the place, and yes, we had reservations. They emailed me the confirmation. When I showed it to him, he just said, "ok". Like he forgot the entire conversation we had about it. Well if that doesn't drive you mad, I'm not sure what will!

This is NOT my disease. It's NOT your disease! YOUR life is NOT ending and there is no reason for any of us to live like it is. Get out there and do the things you love to do. Ok, maybe we can't go dancing with our spouse....but there is still tons that can be done.

The thing I have had to learn is that he is going to die whether I am here or not. He will go into a coma, pass out, have a seizure - whether I am here or not. Should I just sit here and wait for it to happen? Why?

And when it does happen (and it will) I will have my moments of doubt - I will regret that I was not here beside him. But I hope I'm smart enough to remind myself that this never has been and never will be my disease. He has chosen to be non-compliant. That was not my choice. I know the consequences of his decision. He has a very solid DNR that his physicians have all signed off on so there is no question about the path that needs to be taken.

So, to "Managing" - get out there! It won't be with your spouse, but you won't be sitting at home waiting for death to knock on your door. I can't fathom anything more depressing than that! If nothing else, dig a hole in the ground and plant a flower. Or buy a pot and put one in it. Then add another....and another....and soon, you'll find that when you go camping for 3 weeks you have way too much gardening to tend to when you get home! Guess who that happened to? LOL!

Here's hoping you all had a marvelous July 4th!

DW

Day in and day out - life goes on

noreply@blogger.com (Unknown) — Sat, 09 Jun 2018 09:35:00 +0000

Have I become numb to living with diabetes? And is that just ok? Sometimes I wonder! My sister was here yesterday and our truck was done at the shop. He comes out and asks me if I want to take him to get it. I said, "when we're done with our visit." I thought my tone was pleasant - I was enjoying my sister's company. He immediately turned snarky and said, "you don't have to if you don't want to." and walked out the door to the mail box.

I looked at my sister with nothing but sorry in my eyes. Sorrow that she had to see him get in a snit because I didn't jump at his command! But she knows - she gets it. He came back in the house and I said, "would it be ok if I take my sister to lunch, then home, and when I get back we can go get the truck?" and he said "whatever" in his snarky voice and stomped off to his room.

Such a 10-year-old snit - not getting what he wanted the moment he wanted it.

Was he in a bit of a sugar low?

Not too long ago, his glucose went down to 50. We were out camping. It was 2:30 am. I woke up to him falling back onto his bed. I asked what was wrong. He told me his sugar was down to 50 and asked if I had tootsie rolls. Of course, he already knew that I did - that was his way of telling me he wanted me to get them for him. I said, "where are your glucose tabs?" He said, "in the truck". So of course I got up and got him the tootsie rolls and saw that he had just ate a banana.

And then I was awake the rest of the night and yep, he went right back to sleep. I was awake wondering in my head- what if I hadn't gone to the grocery just that morning and brought back bananas and tootsie rolls along with the other groceries. What if I didn't have anything sweet at all in the travel trailer? I would have had to put my clothes on, go out to the truck, find his glucose tabs? Why couldn't he pre-plan for this? Why hadn't he brought his glucose tabs back to the trailer? WHAT IS WRONG WITH HIM???

And I keep going back to the single thought - not my disease. But I doubt he will EVER take care of himself.

Is he getting a touch of dementia. Diabetics with this late stage kidney failure can do that. Is he getting a touch of alzheimers? That can happen as well. What are the signs and symptoms that I need to be looking for?

His gastroparentesis continues to develop. His stomach has times when it is so bloated an brick hard.

His upper legs are "blown up" and brick hard. I googled that. Lipohypertrophy. Don't you just love adding words to your vocabulary? He's switched to injecting in his stomach. 2 times a day, 365 days per year, 14 years.....10220 injections. Something was bound to happen.

And I know that he is a prime candidate for a heart attack or stroke. In my last post - 2 months ago, he had had his labs. His doc called and wanted him to have an ultrasound done because his BUN is high. 36. But remember, it's been as high as 63 in the past. The doc said that there might be a tumor in his kidney. So he scheduled an ultrasound and that doc told him that he needed a CT scan first. Hubby emailed his nephrologist thinking this new doc, a subcontractor to our insurance company, might be trying to rip off our insurance company with unnecessary tests. He's not heard back from the nephrologist.

I'm not pressing this issue. I doubt there's a tumor anywhere. It's just an elimination step in the process. They need to eliminate that possibility before moving on. My research shows me that you can also have an increase in your BUN if your heart is not working. It's not pumping enough blood through the kidneys to filter (clean) the blood.

It's almost a catch 22 situation. The heart doesn't pump enough blood through the kidneys to filter it. So the toxins (protein) stay in the blood and accumulate to a higher level. The damaged kidneys already are having trouble filtering the blood and now the heart isn't pumping hard enough to allow the kidneys to do their job.

But what would they do for his heart? When he had his bypass surgery 9 years ago, they wanted to do 5 bypasses and could not find enough healthy veins and only did 3. He didn't grow new healthy veins in the past 9 years with his A1c going from 9 to 12 and back down to 8. I doubt they could do bypass surgery and he's said he will never go through that again. I'm pretty sure his kidneys would fail since they failed with his last surgery. I'm not sure his kidney function would allow them to do surgery at this point.

So why get the ultrasound done? And I think that's where he's at with everything. He simply has to know his prognosis....or be in such intense denial that it's a protective denial.

Those of us as family members, as caregivers, are the ones who truly suffer the most. It's hard to deny anything when your spouse is having a sugar crash and needs candy, glucose tabs...whatever. You just go into an automatic pilot mode and do what's necessary and then spend the rest of the night wide awake while they get their sleep! Almost funny! But not quite....

I know it's getting close to the end for him. On the other hand, I could easily go first. We have been camping and are planning more trips. It keeps us busy. Hopefully we are leaving in a week and will have a 3-week long adventure with some ocean time. I find when we are camping, I take long afternoon naps. I take long morning walks. I enjoy nature. I come home rested. It's what I need at this phase of our lives.

DW

labs and kidney ultrasound

noreply@blogger.com (Unknown) — Sat, 21 Apr 2018 00:24:00 +0000

A lot of my posts here are just to keep a journal of what's going on. His labs are declining. The nephrologist called and wants to schedule an ultrasound of his kidneys as he thinks there might be a tumor.

My best guess - it's his heart. Here's why I say that.

His last labs were 1/18. Current labs were 4/13.

BUN jumped from 26 to 36. Normal is 7 - 23. It's been as high as 63 in the past! It's the test for blood in the urine and normally means either there is something blocking the kidneys, you are exercising too much, or your heart is not pumping enough blood through the kidneys.

His A1c is 8.3

Microalbumin, ur, detection limit should be under 30. His is 966. But that's down form 2039. Yes, you read that right!

Microalbumin/creatinine should be under 30. It's 720.5. Again, that's down from 2368 two years ago.

Protein, UA, ql should be negative, his is 2+. But that's down from 3+.

I have been charting his labs since 11/16/04 on a spreadsheet on my laptop. I wish the doctors would just sit and go back over where he's been in the past 14 years. This BUN is actually pretty good. For him. But I also am more and more aware that he is now 8 years post bypass surgery and we should expect to see more heart issues popping up. I'm also aware that he is taking his nitroglycerin again.....and he has not told any of his doctors that he's doing that!

Most days I just shake my head and forge ahead! His GFR is down to 40%, but of course it's been down to 0 in the past. While 40% kidney function is pretty good, the other labs are an indication that they (kidneys) are not filtering the waste properly.

Who knew I'd become such a pro at reading labs over the years? I cringe when I ask someone else what their GFR is and they have no clue what I'm talking about! Perhaps all of us should take heed to and pay better attention to our labs and get to know what they mean. It sure can't hurt!

DW

Going blind

noreply@blogger.com (Unknown) — Sat, 07 Apr 2018 02:35:00 +0000

He's refusing to go see the eye doctor.

For awhile, he just had "floaters" clouding his vision.

Then it was florescent blue spots.

Now, there are flashes of bright white light and it happens when his eyes are closed.

From what I can see from internet research, his retinas are detaching.

There are thing that could be done to help him.

He's refusing to go to the doctor.....for anything.

He cannot see anything from sunrise til about 11 am, or from about 2:30 pm til sunset. He says it just looks blank in front of him, but he can see some around the edges. He thinks it the direction of the sun.

I asked him yesterday what his plan was for when he goes blind. He said he would just walk into the sunset. Jokingly, I asked him how he would know where the sun was if he couldn't see it. He said he'd walk towards the heat.

Maybe it's good that he can joke about this.

But I was quite serious. I have no idea what we will do and I think we need a plan. Obviously he doesn't.

He said he was up almost all night last night with the flashes. I don't know how he can go so long with so little sleep.

We are having a spring/winter/spring/winter mix of weather. When it's warm, I'm outside working in the yard and sometimes I think I'm trying to kill myself. I was so tired last night I just dropped into bed and fell sound asleep. At least it is keeping my mind on something other than the prospect of him going blind. And it's keeping me busy!

The blessing is that he's not blind yet.

DW

Interesting things about traveling

noreply@blogger.com (Unknown) — Fri, 09 Mar 2018 03:32:00 +0000

He had a very hard time adjusting to altitude changes. I thought that was interesting. The higher the altitude, the more nitroglycerin he took and the more difficulty he had breathing. I don't think either of us were prepared for that.

Temperature changes affected him as well. If he got cold, he put on gloves....and I'd be so hot I'd have the AC on blast!

Almost a comedy of errors. He worried constantly about having enough insulin. I reassured him that we were never more than 3 or 4 days from home and could start back any time he wanted.

We were gone almost a month. I loved every moment of it. Pretty sure he hated everything about it! LOL!!! But coming home was a shocker to me. I don't think he moved the first 4 days that we were back. And even now, a couple of weeks later, he sits in his recliner nearly 24/7.

He got a new bed and while the mattress is great...he doesn't use it. Says his hips hurt if he lays down too long. I think that might be true with any mattress.

Sometimes I wonder if he is just waiting to die. Nothing interests him. Nothing motivates him. As far as I can tell, he has stopped doing anything that he enjoyed. LED lights, 3D printing. He is like a zombie just sitting there watching TV.

I reminded him that he had said he would go see the doctor about getting his cataracts removed. He said, "I don't think I'm going. I might as well just go blind." I just looked at him and said, "who is going to take care of you?" Of course, I will....but I don't want him thinking that! If there's a chance surgery will help, he needs to do the surgery. (Remember, he has had cornea transplants so the first issue is finding someone who would even agree to do the cataract surgery!)

We are plodding along. One day at a time. He is getting a little more involved in life here at home and I've hit the trail full blaze. Lots of activities with my friends and prepping the yard for spring and all the work that comes with setting in new plants. And I decided to rip out the back corner to have a spot to park our little camper. Maybe I keep busy so I don't have time to stop and think about his disease. Maybe it's a form of denial. Denial of what the future holds more than denial about the disease I think.

I'm off for a getaway weekend tomorrow with a bunch of gal pals. Looking forward to it!

DW

Day 23 of traveling with Diabetes.

noreply@blogger.com (Unknown) — Wed, 14 Feb 2018 14:22:00 +0000

There have been great days, good days, bad days and horribly awful days. Just the same as when we are at home. But I am living in a 17' travel trailer and all the utter nastiness of diabetes is in my face 24/7. Thankfully, I can go outside a lot as we are in southern Arizona and the weather has been amazing!

We extended our time here by 10 days. I am having so much fun visiting with my sister and exploring the area. My brother-in-law comes by every day to have a chat with hubby. They have their RV about a mile from the "resort" we are staying in.

I suppose we are not really on the road as we set up and have stayed put the entire time. Hubby is running low on insulin as we hadn't planned to stay quite this long, so we will be heading back home this weekend.

Yesterday, I saw that he had his nitroglycerin bottle out. I asked if he had been taking them. He said "no". I said, "when is the last time you had one?" He said, "a week ago". Sigh! Well no, not really "sigh". I have done enough research to know that his high sugar level means that the nerve endings in his heart have to be impacted. It's also been 9 years since he had his triple bypass surgery and back then the surgeon said that he couldn't find enough good blood vessels to do the 5 bypasses he had wanted to do.

So the reality of it is that he is at a high risk to have a heart attack. And I am well aware of that.

The second issue was a conversation we had late last night. We had been out to dinner with my sis and brother-in-law and as we were driving home, he said that he hoped I didn't mind doing all the driving. Jokingly, I said, "what? and have a blind man drive me around???" LOL! To which he replied that he was grateful I was willing to do all the driving and he realized that he was going blind and that it probably wouldn't be long before he couldn't see a thing.

And yes, I have known for some time that he is slowly going blind. It must just be horrible being the diabetic that he is. I would be lashing out in anger 24/7 at the things that were happening to my body. Yet at the same time, he has done absolutely nothing to prevent any of this. And he has to have known this was his future.

Some days I worry about what will happen when he goes completely blind. I already know that he is not going to go to school for the blind or even try to manage his way around. I pretty much imagine he will simply give up. Yet I will have to keep going. Other women have cared for blind spouses - it will just be something we adjust and adapt to.

I tell myself that this new adventure will either kill him, or make him stronger. Ha! There have been moments when I think it will kill me! But overall....it has been an adventure. We have laughed at ourselves quite a bit. Dumping the sewer is not something I want to do. But if he can't see......and trust me, there are plenty of jokes to follow that line!

This is our first time in a travel trailer. We are learning so much. Brought the wrong things, too much and then not enough of other items. He had a complete utter melt down one day in front of the people parked next to us. I was mortified. But I held my head high and just kept on going. What else can you do? He threatened once to take the truck and leave me here. I just ignored his comment figuring once again that his sugars were out of whack! But in my head I was thinking I'd just have my brother-in-law tow me home.

Personally, I love being outdoors. This has been so refreshing. There is something about the cool morning air that gets my blood flowing. And the temps here have been perfect. Upper 70s in the day, upper 50s at night. We are surrounded by hundreds of Canadians who no longer feel safe going into Mexico for the winter. Yet they can be here and cross the border any time to get cheaper meds and services. Yep, I forgot my passport! LOL!

It is nice on one hand to have such a complete, total break from our every day life and in ways I'm dreading going back next week. On the other hand, adjusting to live in a travel trailer with "him" has been a challenge. I think it's been worth it and I hope we can do this again sometime soon. If nothing else, I am making sure that I can handle driving, towing, winterizing, dewinterizing....everything that one has to do to have a getaway vehicle. And this summer I plan to join my sis and her hubby on their weekend camping adventures. It will give me some much needed mini retreats to look forward to.

DW

Why?

noreply@blogger.com (Unknown) — Wed, 31 Jan 2018 04:09:00 +0000

why do diabetics get in such snits when they have a sugar crash?

Why don’t diabetics eat on schedule?

Why don’t they test regularly?

Why don’t they take better care of themselves?

Why does a diabetic expect their spouse to take care of them?

If you know you have sugar crashes, why don’t you carry your glucose tabs in your pocket?

Why do you expect someone else to go get them for you?

Why do you think the world revolves around you, when it doesn’t?

Why do you have to get pissed off in public and show your ugliest version of yourself when you are crashing?

Why do you take it out on your spouse?

Why can’t you remember exactly how ugly you just acted?

Why do you get so pissed off just because your spouse is too worn out, too exhausted to care?

Why can’t you comprehend that your ugliness is what wears your spouse out?

Why do you seem to think that getting nasty and yelling will do anything at all?

Why can’t you think?

Why can’t you have an ounce of logic or reason?

Why do you expect others to tolerate such horrid behavior?

How long do you think anyone can love you when you are being so ugly?

WHY?

On the road with diabetes

noreply@blogger.com (Unknown) — Fri, 26 Jan 2018 04:12:00 +0000

well, we are now in our 4th day of this adventure and I must say...what a trip!!

First night in our tiny travel trailer it was 9 degrees outside! Second night we joined up with my sis and her hubby was so much help! But we boondocked for the next 2 nights. Charged the batteries during the day with a generator in order to run his c-pap machine at night.

I have not slept in the same room with him in years and here we are inside a 17’ x 8’ trailer!!! Who is going to kill who first??? LOL!!

Tonight we are at an RV resort in Yuma AZ. Gorgeous property. We have the tiniest trailer nestled between huge RVs. Interesting experience.

First night out, he forgot to take his evening meds. He went to the bathroom 12 times that night.
He has had numerous melt downs, I just walk away. He twisted his knee real bad. I offered to find an ER. He said no. I said I didn’t want to hear about his knee.

Our biggest fights have been over the pups. He doesn’t want to walk them or keep them on a leash. I told him that he does, or we get rid of them. So far, doing better.

I love driving, watching the scenery, seeing the road go past us. My brother in law has lung cancer. He has a 5 year death penalty. My sis is thrilled to have us here. We have already spent way too much time together. She is obsessed with getting 10,000steps in a day. I’ve kept up for 2days now, but my legs are aching bad tonight and I just want to tell her I need tomorrow off. Sure hoping I wake up ready to go.

If nothing else, I think this tripmight get him on some kind of regular schedule. At least I hope it does.

And being with my sis....who faces certain widowhood, makes me appreciate my life a bit more.

There is always someone out there who has it a little worse than you. Just find them. I promise it will help you more than you know.

DW

Pharmacies....hahaha!

noreply@blogger.com (Unknown) — Fri, 19 Jan 2018 03:20:00 +0000

Hubby normally has his prescriptions mailed to him, but we are taking a little trip and wanted to make sure he got them, so had them filled at the HMO pharmacy....45 miles away. They called and said they were in so we made the trip today.

His Humulin R U-500 was not in. He has gotten the vial and syringes for years. Today, they told him he had to switch to the Qwik-set pen. I was in the car and he called me. I went in, and when I asked why he couldn't get the vial, the gal said, "we can no longer get it."

I asked, "why not?" And she said, "they are no longer manufacturing it."

I had already checked Eli Lilly on my iPhone and showed her the website and said, "they are still manufacturing it." To which she replied, "it is no longer on our formulary."

So I said, "I checked your formulary in November and it was on the 2018 formulary. You cannot change your formulary mid year and it is the ONLY reason with have stayed with this HMO."

I had her in a corner and she said, "I'll let you talk to the pharmacist." And of course he started in with the same line of conversation, but when I got to the part that the could not change their formulary, I saw a look in his eyes and I knew immediately that he knew I was right!

He made 1 phone call and the vial will be in tomorrow.

But it means another 90 mile round trip to the pharmacy.

I suggested to Hubby that we make a visit to his endocrinologist when we get home (heading out for about 3 weeks on Monday) and discuss the pen with her. It sounds like the HMO will be taking the vial off their formulary in 2019.

Now, why wouldn't he want the pen? Well, his dad used to have his insulin administered by a pen. It takes much longer to go in, and even I'm smart enough to realize that I wouldn't want a needle sticking down in my skin a nano second longer than necessary.

Why would anyone??? What is wrong with the pharmaceutical industry that they want to inflict pain and suffering on anyone???

He currently uses a 31G needle....one of the thinest there is. The Qwikset pen comes standard with a 29G...a little bigger. But he said the main thing is the time the needle remains under the skin and that is how the pen pumps the insulin out. I'll take his word for that (as I sit here and cringe at the very thought of a needle going into me....do not even try to tell me that you get used to it!!!) I'm the queen of needle phobia - just ask anyone!

When hubby had his open heart surgery, my brother insisted on going in with me the first time I saw him after the surgery. My brother was certain that I would pass out from the sight of all the needles, IVs, etc. I didn't. But I did go weak in the knees and was ever so grateful that my brother was by my side! To this day I can barely stand to have blood drawn. It's just a thing. So I can't fathom giving myself a shot every day and it it hurt for one second, I wouldn't do it! So in this instance, I will come to hubby's defense!

But you have to wonder.....does the pharmacy think they can just switch this for anyone? What if I hadn't been there to make the statements I did? What gives the pharmacy staff the right to blatantly lie to me....that it wasn't being manufactured....that it wasn't on their formulary??? Do they think everyone who walks through the door is a moronic idiot who will just do exactly what they say?

This is January. They have to provide the vials for 11 more months! They HAVE to, by law, notify him in writing that the product is no longer available. And they cannot change the formulary mid year. Did you know that???

Years ago I managed a medical billing unit for a huge home health care agency. That experience has paid off 100 times in my lifetime. I get that the HMO wants to "save" money, or keep people from dosing incorrectly. But this is a guy who has been using a vial and syringes for years. Not someone who just started. And I will never understand blatantly lying to a customer. Simply beyond my comprehension!

So tomorrow, we will get up at the butt crack of dawn and drive 90 miles round trip. All I can say is that a VIAL of Humulin r-U500 better be there! LOL!!!

DW